By Karen Pallarito
Sunday, January 21, 2007 12:00 AM
SUNDAY, Jan. 21 (HealthDay News) -- Beth Witrogen McLeod had never evenheardthe term "caregiver" until six months after her parents died. But during the roughly two years that she served as their primary caregiver -- from 1991 to 1993 -- she amassed a wealth of knowledge on the topic.
Her caregiving journey inspired her to write a 1995 series for theSan Francisco Examiner,The Caregivers, in which she explored the burgeoning trend of adults caring for aging parents. In 1997, she left to write a book,Caregiving: The Spiritual Journey of Love, Loss, and Renewal. Each received a Pulitzer Prize nomination.
Witrogen's immersion into the unfamiliar world of family care-giving began when her 69-year-old father, who had a recurring type of cancer, failed to improve with surgery, and her 70-year-old mother was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's disease) with dementia. Suddenly, she was flying back to Wichita, Kan., every six to eight weeks on unpaid leave from her newspaper job to assist her terminally ill parents.
"I was just stunned by what their needs were all the time, I didn't really have much family that could help, and I didn't know about the network of aging services," she said. "So, things sort of got pieced together through that time, but it was never organized."
Caregiver is a role for which adults are often ill prepared. Sometimes people are thrust into it when Mom has a stroke or begins showing signs of dementia, or when people begin to worry about Dad living alone in a big house with lots of stairs, explained Suzanne Mintz, president and co-founder of the National Family Caregivers Association (NFCA).
But care-giving experts say it is a role that is becoming more visible as the nation's baby boomers struggle to secure the resources they need to help their ill and elderly parents, often while balancing the demands of their own career and family.
Nationally, more than 50 million Americans care for chronically ill, disabled or aged family members or friends in any given year. Most family caregivers are women, typically a 46-year-old caring for her widowed mother. All told, family caregivers provide an estimated $306 billion a year in unpaid services, according to the NFCA.
"In terms of preparation, I think it's important for people to think about the what-ifs," Mintz suggested. "What if Mom has a stroke or heart attack or falls and breaks her hip or we think her safety's at risk? What are we going to do? Assuming Mom doesn't live anywhere near the kids, who could be the first responder? Does Mom have all her paperwork in order?"
Mintz had that conversation with her own brother, after her 89-year-old mother, who lives in Florida, had a bad concussion, prompting terrible headaches and a problem with her eyes. "And so, I called him up and said, 'Who knows what's going to happen here, but if somebody has to go down immediately, you're more flexible than I am because I can't leave my husband by himself,' " she said. Mintz is a family caregiver for her husband, Steven, who has multiple sclerosis.
Preparation is critical because the toll that care-giving can exact is immense. Witrogen now teaches an online course through Barnes & Noble University called "Taking care of Your Aging Parents." In it, she covers issues that caregivers are likely to confront along their journey, from legal and financial matters to emotional and self-care concerns.
"I did not eat well, I did not hydrate well, I did not rest," Witrogen recognized after the fact. She also suffered severe depression during her mother's ordeal.
Care-giving's toll, of course, varies depending on circumstances.
"If you're helping Mom with the groceries every week and her finances once a month and she's still living on her own, that's very different than 24/7 care-giving and Mom's living with you," Mintz observed. Plus, if your parents have money to buy services, say hiring a home health aide, that makes things a lot easier, she said. "But for many people, the money isn't there."
Witrogen suspects that she and her husband, who died last year, spent $20,000 in the one month that her parents died, considering the cost of plane trips, rental cars, funerals and other bills that had to be paid.
Yet, despite the stress and strain of care-giving, her experience also proved to be life-changing in profoundly positive ways.
"You learn to live day-to-day, you learn to live more in the moment," Witrogen said. Most of all, she said, you learn how to give and how to receive love. "We create a more loving world by doing this, by being caregivers," she insisted. "It's a higher calling. I'm convinced of it."
Visit the National Family Caregivers Association for resources for caregivers.
SOURCES: Beth Witrogen McLeod, journalist, author, speaker, and consultant, Antioch, Calif.; Suzanne Mintz, president and co-founder, National Family Caregivers Association, Kensington, Md.